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Friday, 29 May 2015

The 'Undressing Disability' Campaign is being run by Enhance the UK, a charity that offers disability training awareness as well as support in lots of areas of disability

'Undressing Disability' is a programme focused on sex education, positive body image and allowing disabled people to talk about sexual health despite their disability. They have a blog, support groups and a Love Lounge were questions about sex can be asked by the public, and answered by 'sexperts.'

The charity are also publishing a book with real-life stories from disabled people and their experiences with sex, dating and relationships. I sent my chapter off the other week and received a great response. My story was quite hard to write as it was about my first love and before I was diagnosed with Ehlers-Danlos Syndrome, so I was going through quite a lot at the time. It was difficult to write but very cathartic, and I'm thrilled to be part of such a great campaign.

Times have moved on; sex is discussed a lot more openly now but there is still a stigma surrounding disabled people and sex, and that needs to change. We want it just as much as the next person.

I love the new packaging for the Summer collection, the gold lid is a lot more luxurious.

The lipsticks are a creamy-matte formula, are highly pigmented - one swipe and BAM, full coverage. They have a perfectly formed doe-foot wand for precise application and don't tug on the lips. They retail for £16 and are said to last for 6 hours. I have worn all of these lipsticks since I purchased them last week and they wore really well, I didn't have to reapply during the day and they held up through eating and drinking. In my opinion, they are extremely comfortable to wear and they don't bleed or transfer.﻿

Oh, and the scent, did I mention that? They smell absolutely amazing, like buttercream-cakey-goodness!

Stila are one of my favourite liquid lipstick formulas, I love Patina and Aria from the original collection but I'm so glad they have added some much needed pops of colour to the line. Amalfi is most definitely my favourite, it's a stunning colour and I know I am going to be rocking it a lot over the next few months.

Did you buy anything from Stila's Summer collection? What do you think of the liquid lipsticks?

Monday, 25 May 2015

Us lucky lot with a chronic condition usually deal with an array of comorbidities - meaning that additional illnesses co-occur with the primary condition. I was diagnosed with Ehlers-Danlos Syndrome first and then various other disorders as time went on; some of them are heavily linked with EDS and others are completely stand-alone. As some of the symptoms overlap it is increasingly difficult to decipher which condition is causing a particular symptom.
However, below is a few other conditions that I have to deal with (yay me):

Dysautonomia - Many patients with EDS, especially hypermobility type (H-EDS) suffer from a dysfunction of the autonomic nervous system. This includes heart rate, body temperature, digestion and blood pressure. I find it difficult regulating my temperature, I can be shivering cold, covered from head to toe in dressing gowns, duvets etc and not able to get warm, or sweating in the middle of winter. I also sometimes have difficulty swallowing and my blood pressure fluctuates.

Postural Orthostatic Tachycardia Syndrome (PoTS) - When changing position there is an increased heart rate; this causes dizziness, light-headedness, palpitations, blackouts, headaches, poor concentration, chest pain, and shakiness, amongst other things. I have been suffering quite badly with PoTS lately, I am extremely wobbly, seem to be constantly shaking and have horrible 'shaky' attacks were I feel disconnected from my body, it's very strange and extremely uncomfortable.

Fibromyalgia - Fibro is widespread chronic pain and fatigue. It is typically diagnosed by pressing on specific tender spots. I remember almost punching my GP when she was examining me, it was absolutely excruciating, she wasn't applying that much pressure but it was so painful. Even if I rub my shoulder and accidentally hit one of the tender spots, I feel like I'm going to be sick. I hate it, I don't want it.

Irritable Bowel Syndrome - Most people with EDS suffer with gastrointestinal problems due to the stretchy tissues. I'm very sensitive to certain foods and have to keep a 'food diary', I suffer with nausea, agonising abdominal pain, reflux (I even choke in my sleep, which is a barrel of laughs), and then all the other lovely things related to IBS.

Depression and Anxiety - Due to all the pain, lack of sleep, lack of social life, I obviously get depressed. I become very low, quiet, I shut myself off from the world, I cry a lot and there's not much that interests me when I'm feeling like this. I also suffer with panic attacks, I'm weary of new things, I don't like being on my own, I just feel on edge most of the time and it sucks. This obviously affects my (lack of) sleep.

Plantar Fasciitis - Who wouldn't want that fancy-named condition? It's basically a jazzy way of saying 'inflammation of the heel'. It's so painful when it's acting up - each step is a nightmare. I wear shock absorbers in my shoes to help but it can be torturous.

Flat feet - Yes, ladies and gentlemen, how sexy? Heavily linked to H-EDS, flat feet is common as the ligaments stretch (because we're bendy) and the arches collapse. A podiatrist once told me that I had feet like 'wiggly worms' as when I was observed walking my feet went all over the place, some people walk on the inside/outside of their feet, mine do as they please and each step is a gamble. I have custom-made insoles for my shoes.

Temporomandibula Joint (TMJ) - My jaw dislocates, is painful, the dentist dislikes me, eating hurts, it clicks all the time, I get ear and face ache. This is connected to H-EDS too.

Costochrondritis - Ever felt like you have a pile of bricks on your chest? Costochondritis is an inflammation of the joints between the cartilages that join the ribs to the sternum. Breathing is brutal when this is kicking off, I try to hold my breath so I don't have to keep enduring the pain

Kyphosis - This is a curvature of the spine, the vertebrae in my spine did not develop properly. I've had this since I was a teenager and my back is always sore, every day. I've recently had an MRI to see what else is going on.

Sciatica - I had an MRI because I keep getting sciatica, at least once a month and it lasts for a week. I can't lift my leg an inch off the floor when it's bad. It's a nerve pain that starts in my lower back and radiates down to my bum and thigh. It causes numbness, weakness and extreme pain - I scream with the pain. I hate it.

Insomnia - A lot of patients with H-EDS have insomnia; sleep disturbance due to pain is common as is actually getting to sleep and maintaining it. There's nothing worse than being absolutely exhausted and craving your bed but lying awake staring at the ceiling because your *insert painful bit here* is killing. I go through phases of sleeping okay for a week and then awake at all hours and sleeping a couple of hours for three weeks. It's a horrible cycle.

Chronic Fatigue Syndrome - But I'm knackered all the time. CFS goes hand in hand with H-EDS and Fibromyalgia, it's not like the 'tired after work' feeling, it's absolute exhaustion after you've just woken up. It's not aided by resting, it's feeling like you could drop after brushing your teeth, the easiest task is draining...and then I can't sleep because of the insomnia. I spend a lot of time in bed, I take naps. I'm shattered.

Raynaud's Syndrome - The blood supply to my fingers and toes is affected, they lose colour and become painful. I should probably wear gloves more often.

Neuropathy - Neuropathic pain is that burning, shooting nerve pain that can occur when a nerve is pinched or compressed. This happens on a daily basis, I am always twitching, having muscle spasms or numbness in various areas, it isn't pleasant and the spasms make me very self-conscious.

Migraines - Of course, I get debilitating migraines too. I can barely open my eyes, they make me nauseous, sensitive to light and noise, dizzy and irritable. I try to go straight to bed when I feel a migraine coming on as I can't function at all and shutting my eyes is the only solution. Along with meds, a lot of meds.

I know for a fact that I will have forgotten something but only time will tell. If you'd like to know coping mechanisms or a more in-depth post about a particular condition, do let me know.

Please take a look at my post dedicated to EDS to find out more about the condition.

I needed the Hydrating Primer as I have combination skin and it's been really dry lately, hopefully this will help my make up last. Aqua Rouge is double-ended and can be used as a matte liquid lipstick, or topped with a gloss - I love that. And, a girl can never have too many powders!

The HD Powder came with a free sample; this way the product can be tested and if it isn't right the full-size can be returned for a refund, the item must be unopened and can be returned to any store or online within 28 days. I think this is a great idea as make up is expensive and the returns policy can be quite difficult, this gives you the option of trying the product and deciding whether it is suitable for you.

I can't wait to try out all these new products! I've read great reviews on the Urban Decay concealer, Afterglow blushers and the Clinique lippies.

How gorgeous is the packing of the UD blushers? I may have squealed a little when I took it out of the box. Obsessed is a beautiful matte, light baby pink, it has great pigmentation and is buildable. I can't wait to wear it.

I've been wanting a Clinique Lip Pop since they were launched and now Beige Pop is mine. These are lip colours and primers in one! My chapped lips could definitely use the moisture, I feel like this may be a favourite and I might need more.

This claims to add instantly build body and after using it for a few weeks, it does. It's to be used on damp hair and I part my hair into various sections and spray it directly onto my roots just before blow-drying. I like this product and would definitely purchase it again.

A volumising hairspray with a gorgeous scent, I really, really like the smell of this hairspray but it's nothing special. 'Big volume' - no, no, it does add some volume to your hair, for about ten minutes and then it's flat and feels non-existent in the hair. Even after I backcombed and sprayed it, it seemed to fall out. Will not be using this again. Stay away if you want to keep your hairstyle for longer than minutes.

I bought this as an impulse buy because who doesn't want a volumising hairspray that also adds shine? I didn't need it, my hair is already shiny but what the hell, I got it anyway. The hold is the same as the 2Sexy, I don't rate it at all. I'm really not a fan, will not be repurchasing.

I like the idea of this product, the spray nozzle is good as you can direct the product right at your roots...don't do what I did and spray it from a distance because it gets everywhere! The scent of this is nice too but it's very sticky, after I touch my wet hair, my hands feel disgusting, when my hair is dry bits of it are stuck together and seem matted and although it seems to add a bit of volume, it's not worth it. Save your money.

This shampoo is made with Australian Hop extracts and it smells divine. After my hair has been washed the scent hits me every so often and it's lovely. I feel like it thoroughly cleans my hair and adds volume but it leaves my hair a strange texture when I wash it off, I can't really explain it. If I didn't use a conditioner, I don't think I'd like it as much. I'll probably repurchase just for the scent.

I really like this conditioner, it leaves my hair smooth and silky, a little goes a long way and again, it smells wonderful. I'll buy this again.

I feel like the combination of the Aussie Shampoo and Conditioner with the Samy Fat Hair spray is a good combination for adding volume. If you have any high street/drugstore recommendations I'd love to hear them. I'm trying to find cheaper alternatives to the Sexy Hair range.

Wednesday, 20 May 2015

My day usually starts in the early hours of the morning, not because I wake up early, but because I don't sleep. I go through phases were I sleep for eight hours plus for a week but drop off around 2am and then 2-4 weeks of insomnia/painsomnia. My nights consist of lying in bed until around 5am counting the hours until I can have my next lot of meds or completely wide awake and begging myself to 'just fall asleep.' I didn't sleep that great last night because I was worrying about my hospital appointment.

I was up at 10am, I slept for about five hours and felt awful. As soon as I sit up, I take a handful of pills (gastro, painkillers, anti-depressants) and then stumble to the bathroom like a 'baby giraffe' (according to my boyfriend). I'm unsteady on my feet anyway, but I'm so much worse in the morning, my head is cloudy, the PoTS messes me up, I'm dizzy and off-balance. My joints are stiff, my knees ache and I generally wake up in a bad mood. Morning person I certainly am not.

I assess my pain levels before I even consider taking a shower, if my back is destroyed, I don't bother. What's the point in exacerbating things...? She says that; my back was killing today and I needed to wash my hair, I was rocking fourth day hair and no amount of dry shampoo would revive that tatty mess. Plus, I was going out. I try not to shower on days I go out, and I understand how bizarre that may sound as the norm is to shower and smell fabulous before leaving the house. I don't have that luxury, if I'm going out, I'll shower and wash my hair the day before, so after I'm dry I can spend the day recuperating; it's such a chore to get ready, it hurts. I never thought I'd be complaining about washing whilst in my 20s.

My nephew was here this afternoon so we watched Peppa Pig and he told me about his new fish, 'Geek', he's two and thinks that's a great name for a fish. Cutie.

Every four hours the alarm on my boyfriends phone went off so I could have more painkillers. I can never remember if I've taken meds or not, my memory is shocking. I just tell him when I'm having them and he sets a timer, this way I don't double-dose.

The scan was in the back of my head all day. I've had multiple MRI scans throughout my life and they never get any better, I'm claustrophobic and I can't keep still for long periods of time, my muscles hate it.

I did my make up (it looked amazing, might I add), slowly got dressed and drove to the hospital.

My boyfriend and Mum came with me. My boyfriend was allowed into the scanning room because I was nervous but before that we had to remove any metal. I had seven ear piercings in so that was effort. The nurse and radiographer were lovely and reassuring, they helped me out of my wheelchair, onto the bed and put headphones on me. I immediately jammed my eyes tightly shut. I was given a panic button but was determined not to press it. Every other time, I've buzzed repeatedly but not this time, I wanted to get it over and done with. My eyes did not open once, I knew I was enclosed in that horrible gigantic magnet but tried to focus on the music from the headphones. I was so tense that I'd clenched the muscles in my legs. After two minutes, the clenching was the most ridiculous thing I could have done because the tension turned to pain, which set off spasms. There's nothing worse than not being able to move and battling with stupid jumping nerves. This made me even more rigid. All I could think of was the pain and how badly I wanted to get out of this scanner. I hated it.

Finally, I was out. I went really lightheaded when I sat up and the muscles in my legs twitched; my boyfriend suggested that I didn't move, so I did as I was told, for a change. I knew I had jelly legs and it would have only ended in a disaster had I tried to stand. I didn't fancy an introduction to the floor.

I got straight into my pjs and bed when I got home. The pain in my shins is horrendous, the pain in my back - agony. Lying still (or kind of still) for thirty minutes has done my stupid body no good. Who knew doing nothing could hurt so much?

My evening will consist of some writing, watching TV with my boyfriend, more tablets, probably read and hopefully a long, long sleep.

Other than the MRI, this is a true representation of my life with EDS, just substitute the scan for another hospital appointment. I'm not at the hospital every day but I do usually have at least one appointment a week. I haven't had any accidents or dislocations today but it's still early. If the pain could go away, I'd very much like that as I'm exhausted. I'm that kind of tired were I could easily fall asleep on a washing line.

I hope this gave you a little insight into my life with Ehlers-Danlos Syndrome.

Monday, 18 May 2015

Kat Von D Beauty are adding more colours to the Everlasting Liquid Lipstick line, and they will be coming to Sephora in July; I cannot wait! The original lipsticks retail for $20 (around £12.70) and are a long-lasting, full-coverage, matte liquid lipstick.

I own Berlin and the famous Lolita(in-depth post coming soon); the opacity is there in one swipe as they are so highly pigmented, they don't tug on the lips when applying, they're quick drying, the lasting power is incredible and they don't leave that annoying mark on your chin when you're eating. Not only that, the colour range is so vast, and with the new additions, it'll be even better.

I'm obsessed with liquid lipsticks, like I'm sure a lot of make up junkies are, but the Kat Von D liquid lipsticks are my joint favourite formula (with the Stila - Stay All Day Liquid Lipsticks). I don't feel like they're at all drying on the lips and I have very chapped lips lately. I can't praise them enough. The only annoyance is they're only available from Sephora and customs charges are a bloody nuisance. However, I'll still be ordering them, so I'm not that annoyed!

﻿

I'm lusting after all these pink tones, especially Selektion and Rosemary's Baby. I think Selektion is a gorgeous colour for Summer as it has that pop of coral and Rosemary's Baby reminds me of Stila - Patina, a wearable lip all year round. I have a feeling that I will purchase all four of the above because they're all quite neutral and would look beautiful with any make up look.﻿

I was so pleased when I saw these purple/lilac colours would be added to the line as they're stunning. I have been loving Nars Audacious - Dominique recently so a lilac liquid lipstick definitely ticks all of my boxes. I hear Susperia and Ayesha calling my name! I'd wear these on a daily basis as I'm not too afraid of a bold lip.

Bow 'n' Arrow is making a comeback!!! I'm so glad that it's been renewed, it's such a pretty nude. I have Noble in the Studded Kiss Lipstick range so probably wont bother picking it up, however Nosferatu and Damned look gorgeous and I'm debating whether I need them.

Witches andEcho are some of the most bold, daring colours that will be released in July. The pitch black of Witches and the richness of Echo are gorgeous but not something I gravitate towards, maybe I'm not that brave! Alas, who knows what my lipstick future holds?

Lolita II will also be added to the collection as there was a manufacturing error and the original Lolita went from a rosy nude to a browner dusty mauve; Lolita II will be the original rose beauty. ﻿

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The names of Kat Von D's shades always bring a smile to my face, they're so original and quirky, you can really tell she puts so much effort into making her brand an extension of herself.

Friday, 15 May 2015

1. But you don't look sick, you look great.
- What exactly does 'sick' look like? I didn't realise I was doing it wrong.
- I left my 'Chronically Disabled' banner at home, sorry.
- You didn't see me throwing up all morning and then crying when I tried to lift my leg so my partner/family member/carer/friend could put my socks on - it's called 'putting on a brave face.'
- That's the power of make up, my friend. 2. What's wrong with your leg?
- Oh, because I'm on crutches without a cast, I must have broken my leg! How many other people do you see out of plaster, using specialised crutches hobbling around?
- Yes, I'm in a wheelchair because my leg hurts, not every joint in my body.

3. You're too young!
- No shit. People can be born disabled, you know?
- There isn't an age limit on disability.

4. Just take some paracetamol.
- I wish it was that easy. Paracetamol do absolutely nothing, unless topped up with various other meds, but still the agony continues. It may dull your headache but they're about as useful as Haribo.

5. You just need a good nights sleep.
- Sleep? Sleep? What is this sleep you speak of?
- Sleeping for a week wouldn't help. Fatigue is a chronic conditions best friend. Some Spoonies can't sleep because of pain and are exhausted after the most mundane task - once you're knackered after washing your hair, then come and tell me to get a good nights sleep.

6. You'll be okay tomorrow.
- If only. I may be feeling a little bit better but I won't be completely cured.
- Don't talk about tomorrow, I'm trying my best to get through today.

7. I'd love to stay home all day, like you.
- Are you kidding? Do you not think I want to participate in society? Do you realise how lonely and isolated I feel?
- It's boring.
- I want to go out and do things.

8. I remember when I fell down the stairs/had the flu/got a splinter.
- It's not the same. Jog on.
- Everyone has experienced pain, but until your life is dominated by it, you can't even begin to compare.

9. If you think positive, things will get better.
- Positivity is a good thing but it's not a cure. There is no cure, and if it was that easy, we'd all be doing it, trust me.

10. Don't you rattle with all the drugs you take?
- No, and if I didn't take them I wouldn't be able to function.
- You do realise that they dissolve?
- Do you think I want to be reliant on pills?

11. Have you tried...?
- Anything you suggest, I can guarantee you that I've tried it. Twice. If there was something that would help, I'd be doing it.

12. You need to get out more.
- I know. I can't. It hurts. I'm sorry.

13. Why are you parking in a disabled bay?
- Because I have a Blue Badge.
- You can't always see disability, so don't assume.
- I promise you, I wouldn't be parking here if I didn't have to.

14. You haven't really got anything you can look forward to, have you?
- Yes, I still have a life, it's just a little bit more challenging and I need to plan things down to the minute.

16. You're lucky, you can nap whenever you like.
- And it ruins plans.
- It makes me grumpy.
- I can't function at all if I don't nap, I have no control over it.

17. You're such an inspiration.
- As nice as this is, I haven't done anything inspiring, this is my 'normal'.
- I'm making the best out of a shitty situation, I'm not a hero.

18. Losing weight will do you the world of good.
- It won't change anything.
- I was skinny when the pain started.
- It's difficult to exercise when moving hurts.

19. You probably just need some anti-depressants.
- On them, not cured. Still in pain.
- They're to help with a completely different condition.

20. It's all in your head.
- Yes, I do have mental health problems. No, I'm not making the pain up.
- It's a recognised condition - this chronic-pain-thing.

21. There's people worse off than you.
- I'm fully aware of that and I appreciate that everyone is suffering in some way or another but I'm not comparing myself to anybody else, you are.
- And there's people better than you.

I've heard all these lines and probably more. I realise some of my answers aren't very diplomatic and may come across aggressively but it's because the comments annoy me. I mean, wouldn't you be slightly irritated if you were in agony and somebody told you they felt sorry for you? I don't waste my spoons on answering these questions anymore, they're reserved for much more important things...like brushing my hair.

Have you had any comments/questions asked about your disability that annoyed/upset you?

I was swift with my first item, I swatched the contour shade on the back of my hand, it blended like a dream, I did that face of sheer delight, paraded my hand in front of my boyfriend, he wasn't arsed, I put it on my lap (I was in a wheelchair) and continued shopping. Finally, the contour trio was to be mine, I'd lusted after them since watching Jaclyn Hill use them in a video AGES ago.

Next we went to the YSL counter but there was nobody there to answer my questions, (I like to discuss make up with anyone who will listen) so I swatched the new YSL Tint-in-Oil's in every colour and just stared at my hand. They felt amazing but I had no idea how much they cost and had told myself that if they were extortionate, I wouldn't be bothering. So, I paid for my Smashbox items and R2-D2 USB pen for my boyfriend and we left.

Then we went to Accessorize and I bought three rings. Each were £10 and sterling silver. I'd wanted a midi-ring for a while but kept forgetting about it whenever I was out shopping, mainly due to make-up-brain taking over. I finally found one that I liked and the assistant wrapped them up in cute little parcels.

As I had never been to the Centre before, I had no idea where anything was, and since Nars, Mac and Urban Decay were all in random department stores, I didn't know where to start. We went to John Lewis and I reacquainted myself with the YSL Tint-in-Oil's, swatching them again, loving them a little bit more. The assistant was busy doing another customers make up and I couldn't be bothered waiting so we left. I wasn't feeling great and one of the tyres on the wheelchair was going down, making it difficult for my boyfriend to push so we decided to head off home...but on the way out, I saw Boots and I couldn't leave without them YSL products.

Can we just take a second to appreciate how beautiful the YSL packaging is please?

The lady on the YSL counter was a delight. She dropped me some compliments, saying I had beautiful porcelain skin and how lovely a couple the boy and I were, which went down well.

I'd heard a lot of great things about these lip tints on YouTube, LolaLynn and KathleenLights raved about them. The colour is very sheer but they are packed with essential oils (Apricot Kernal oil, Passion Flower oil, Macadamia oil, Jojoba Seed oil and Coriander fruit oil) that help nourish the lips. They feel so luxurious and expensive and I'd expect them to at £23.50 a pop. They're not at all sticky, are shiny like a gloss, have the perfect sized applicator, smell absolutely gorgeous and they leave a slight tint to the lips. The longevity isn't incredible but after wearing them for a few hours my lips go from a horrible chapped mess to ultra-soft and kissable. I've worn them on their own (they're great for 'no make up' make up days) and on top of lipstick. I just love them.

You need to remember that these are not lipsticks or glosses, they're almost like a tinted moisturiser for your lips. And the packaging is to die for! How are these my first YSL products? I need more.

5 - Cherry My Cherie

6 - Peach Me Love

I'm already eyeing up the next colours I want, 3 - Undress Me and 4 - I Rose You.

Monday, 11 May 2015

I graduated with a BA (Hons) English in 2012 and then a MA English in 2013; they will forever be up there with my biggest accomplishments. Above is my favourite picture from my Masters graduation with my boyfriend; why are the most ridiculous photos always the best?

I went to Edge Hill University, started at the age of 22 and was terrified because I didn't know how I was going to manage my condition and keep up with student life. I can't hold a pen, I can't sit at a computer for long, I can't concentrate, I end up in agony if I'm sat in a certain position for more than ten minutes, if fatigue is kicking in - I need to sleep, etc etc. There were a lot of cons; however, they were vastly outweighed by the fact that I love to learn and I wanted a degree (or two).

As soon as I applied at Edge Hill, I made enquiries regarding support for disabled students and was given an appointment with the Inclusion Team. I was designated an advisor who I went to with any concerns I had; he helped me apply for Disabled Students Allowance which helps pay for any specialist equipment needed, non-medical helpers, travel and any other costs related to my disability. I received Dragon NaturallySpeaking (a speech recognition software) so I didn't have to type all my essays, an ergonomic trackpad mouse and keyboard which helped my hands a lot, laptop stand, bookstand and a light, portable lumbar support for sitting in lectures and seminars. I also was awarded the two best learning facilitators anybody could ask for, they stayed with me for my whole four years and I would definitely not have achieved my degrees without them. They came to my lectures and seminars and took extremely comprehensive notes, then typed them up and emailed them to me the same day. I can't even begin to tell you incredible that was. On days I was feeling awful and there was absolutely no way of concentrating, I didn't miss out on anything as their notes were so thorough. If I had any worries I spoke to my LF's and they discussed it with my Inclusions advisor. Exam modifications and alternative assessments were arranged, so if I sat exams I could do them at a computer with 25% extra time or I could write an essay instead. As I studied Literature, the exams were mainly essay-type questions so my extremely understanding tutors allowed me to take the paper home and write an essay, usually to be handed in the following week. I was assisted throughout my whole time at Edge Hill and if it wasn't for the support put in place, I wouldn't have been able to cope.

The relationships with my tutors helped a lot too, if I was in an enormous amount pain or highly fatigued, they appreciated that I made the effort to attend but didn't urge me to contribute to discussions. I liked to be involved and was quite vocal in seminars so even when it felt like my shoulder may fall off, I'd find a kind-of-comfy position (usually leaning in a very strange way and holding my shoulder) and participate. If it got too bad, I excused myself and headed home. I probably didn't do that as often as I should have, but I loved my subject and didn't want to miss anything.

My four years at University was difficult, not only because of the chronic pain, but the stress, the non-stop work, the walking from lecture hall to seminar room, the carrying my bag and books, the sitting at the back of the room so nobody could see my muscle spasms. But it was worth it. I absolutely loved being on campus, I made some amazing friends, I have two degrees and I wouldn't change a thing. Granted, I know way too much about the Victorian Freak Show and transcendental medicine but it changed my life. I like to think my knowledge of the nineteenth-century makes me a little bit more interesting. My dissertation supervisor was so encouraging and welcomed all my wild and macabre essay titles, she wasn't shocked when I handed her an assignment on the 'Victorian Celebration of Death,' because it was something she expected from me. I went on to study for my Masters because of her; she introduced me to Victorian Literature and I will forever love it.

If you're disabled and think that University isn't an option, I assure you that it is. There is so much help available that I had no idea about until I was introduced to the Inclusion Team. I'm not saying it will be easy, because it won't. You'll struggle, you'll want to give up, but stick at it because there is nothing better than hearing your name being called out at your graduation ceremony (I nearly cried).

I'm more than happy to offer any advice or answer any questions, please get in touch.

Saturday, 9 May 2015

I've been craving that wavy, beach hair and since my hair is at a length that I'm able to curl, I thought I'd pick up a curling wand and test whether my uncoordinated self could manage it. I'd read a few reviews and as always, there was positives and negatives to each wand. In the end I decided on the Remington as it was recommended by a Twitter follower. I got this little haul when Boots were doing a Triple Advantage Card Points event over the Bank Holiday weekend. It is a 13mm - 25mm conical barrel; has a digital display and temperature control lock function, ranging from 120C - 220C; heats up in 30 seconds; cool tip; auto safety shut off; protective glove; heat resistant pouch and a 3m cord. That's bloody good for £26. I haven't used it yet so I can't give a review but as soon as I have, I shall let you know how it performs.

I also bought the 50ml Surf Spray; I haven't used any Bumble and Bumble products but I've heard great things so thought I'd throw this in my basket to help achieve the wavy curls I desperately want. You can spray it on damp or dry hair, which was one of the reasons I bought it; I like products I can use with second/third-day-hair. If it's incredible, I'll no doubt be purchasing the larger size but only time will tell.

Finally, I got a Tangle Teezer in 'Plum Delicious' because I love all things purple; it was £10.99 and after looking at them when I had short hair, (and let's face it, I hardly brushed my short hair) I didn't feel the need as my hair really was too short to tangle. However, since growing my hair, the tattiness is back and I need to learn to remember to brush on a daily basis. My cousin uses a Tangle Teezer on her daughter and it effortlessly brushes through the knots, and now it'll get rid of mine. Have you tried the Tangle Teezer?

Thursday, 7 May 2015

EDS is caused by faulty collagen, it's genetic, I was born with it. There are several different types, some much rarer and severe than others. I have type III, more commonly known as the hypermobility type; I'm very bendy, have stretchy skin, unstable joints, chronic fatigue, terrible balance and coordination, on top of a lot of pain. Since the connective tissue is dodgy, my skin, organs, bones, ligaments, muscles and tendons are affected and as I have no breaking point, I basically bend until I dislocate, sublux (partially dislocate) or cause some other damage. I pull muscles easily, I wake up with dislocated fingers, if I sit a certain way I sublux hips; I really need wrapping up in cotton wool.

Imagine your legs when you're stood up, your knees are straight, aren't they? Mine bend back a bit, like a flamingo and this happens every time I take a step, stretching everything, the skin, muscles, tendons and ligaments...Now apply it to your whole body. All day, every day, someone with EDS III is hyperextending, even typing this the tips of my fingers are bending backwards. And that's why I'm in pain all the time. Some days are much worse than others, but I can't remember a day I have been completely pain free. Then when I'm feeling a little brighter the fatigue hits me in the face with a hammer and I can't do anything until I've had a nap. Or brain fog takes over and I can't find the simplest word, for example, I asked my boyfriend to 'close the window doors,' because I couldn't summon 'curtains' to my mind; this happens way too often. I also have horrible muscle spasms and twitches, sometimes punching myself in the face or close to. There's a lot of comorbidities that are related to EDS but I'll leave that piece of awesomeness for another time.

EDS isn't the easiest condition to diagnose as it doesn't show up on X-rays, MRI scans, blood tests or any conventional screening a doctor might send a patient for. A lot of people wait years for a diagnosis and that is really sad.

My Story:

I have been in pain and living with EDS since I was 13 years old but wasn't formerly diagnosed until I was 19. I can't tell you how many counsellors and psychiatrists I visited because apparently my pain was 'all in my head.' I was depressed, suffering with anxiety and in agony, but only my family believed that my physical pain was real. Those six years whilst I waited for a diagnosis were torturous; I didn't want to go and talk to a psychiatrist about how I was manifesting the lack of relationship with my father into physical pain, or how I was faking agony to avoid going to school to be bullied. I knew there was something wrong with me and it was much more than my mental health. Eventually, my step-dad paid for me to see a consultant and within five minutes of being in the room, my life changed. I was diagnosed with Ehlers-Danlos Syndrome.

Nine years after my diagnosis and I'm still learning about my body and my condition. I sometimes forget I have limitations and really beat myself up for not being able to do what everyone else can. Other times I'm incredibly grateful for my life and love how much of a strong person my disability has made me. Don't get me wrong, I'm not one of those happy-go-lucky positive people, those people annoy me, but I don't feel sorry for myself. I'm in pain, agonising pain on a daily basis but these are the cards I was dealt. I use Smart Crutches to get about and a wheelchair whenever we go anywhere as I can't walk more than a few steps without wanting to curl up in a ball of agony and cry. I'm still getting used to all the adaptions, splints and braces I need and I feel like I'll always be on this learning curve, mainly because I'm stubborn but I'm sure I'll get there in the end.

Monday, 4 May 2015

I had long hair forever, (bottom left) well not forever because I clearly got it cut, but I had long hair from childhood until I was 22. I'd had it blonde, brown, red, black, fringe, no fringe, side fringe, and I got bored. I kept tying it up in a way that made it look short and I liked it.
I've never been afraid of haircuts, you know them women who sob on TV when they change their hair? I'm not like that. I was getting it cut but my family were dead against it, so much so that my Mum called my hairdresser and told her that she wasn't allowed to take scissors to my hair; my Mum can be pretty scary so my hairdresser didn't want to cut it. On the day of my hair appointment I did what any child who wanted their own way would do, and I lied. I told her that my Mum was fine with it and to start chopping. The top left is what I went home with, it was an inverted bob and I loved it. It was chopped in at the nape of my neck and longer at the sides.
After a few months, I got bored of that too, so had my hair dyed bright red, shortened and shaved on one side; I'm still convinced I started the undercut trend. I had the left side shaved on a number three and messed the rest of it up. I kept that style for a quite a while but changed the colour every six weeks, deeper red, dark purple, bright pink, bright red...and then thought, fuck it, let's do orange. My hair was cut even shorter, with lots of layers and my Mum despised the orange. I was embracing my love for all things alternative and I bloody loved it but the maintenance was difficult, I thought red was a struggle. Red again, red, red, red. I love red.
Obviously, I got bored of short hair...are you seeing a pattern? So, last year, January 2014, was the last time I had my hair cut and despite everyone telling me to get extensions, I played the waiting game and began growing my hair out. I'm still growing it but it's at a length now that I really like and can actually do things with other than tying it into the tiniest ponytail. So many times I went to the hairdressers and I almost picked up the trimmer and cut it myself; the amount I complained to my poor boyfriend about how I hated my hair and looked a mess, but it was worth it. Oh, and now I'm a brunette.

My hair must be in shit condition, I hear you say...! Alas, my hair is so healthy and shiny, people always comment on how nice my hair is, (they really do, I love all my fans). I don't do anything special to it, I used L'Oreal Elvive Colour Protect Shampoo and Conditioner for a really long time and sporadically OGX Nourishing Coconut Milk Shampoo and Conditioner, but recently I switch up my shampoo as often as I do my make up.

I have noticed that because I'm used to messy short hair that stays put with a little bit of clay, I like the messy longer haired look but I can't quite achieve it..so, I am testing out some drugstore volumising hair products and shall be updating soon.

Saturday, 2 May 2015

I'm Sarah, I'm 28, I'm originally from Liverpool but live in Lancashire and I'm disabled.
I used to write a blog, not religiously, just as and when I remembered, but since I've been reading a lot I decided to get back into it. I guess you could say I'm a 'not so new newbie'.

More About Me:

I have a BA (Hons) and an MA in English, which I'm really proud of as I struggled a lot with my health during the four years I was at uni. I love to bore people with my love of Victorian Literature, especially the Medical Humanities and the Victorian Freak Show.
I have Ehlers-Danlos Syndrome Type III, a hereditary condition that affects the collagen in my body, and since everything is made up of collagen (skin, bones, ligaments, muscles, tendons) I'm pretty much a walking disaster; that's when I can walk. I'm very flexible but my joints are unstable and dislocate; I'm in chronic pain, always tired, bruise easily, have problems with temperature regulation, with my heart (PoTs), bowel and bladder, and suffer with anxiety and depression. Barrel of laughs, aren't I? To top it all off, I have Fibromyalgia and Kyphosis. I volunteer with the HMSA, I run a local support group in Liverpool for people with any type of hypermobility syndrome, once a month, I'm also part of the social media team. Don't worry, my blog isn't going to be me writing about how sore and sad I am; of course there will be the odd post about how my disability affects me as it's a major part of my life but I also have a lot of other things I want to write about. I guess it'll be a 'lifestyle' blog, that's a thing isn't it?
I love beauty, I'm a make up addict so I will most definitely be sharing reviews of products and hauls. As well as skincare, hair products and book reviews. I just want to write, so here I am.